{"id":221267,"date":"2021-04-07T20:52:38","date_gmt":"2021-04-07T17:52:38","guid":{"rendered":"https:\/\/en.buradabiliyorum.com\/canadas-public-health-data-meltdown\/"},"modified":"2021-04-07T20:52:38","modified_gmt":"2021-04-07T17:52:38","slug":"canadas-public-health-data-meltdown","status":"publish","type":"post","link":"https:\/\/buradabiliyorum.com\/en\/canadas-public-health-data-meltdown\/","title":{"rendered":"#Canada’s public health data meltdown"},"content":{"rendered":"

“#Canada’s public health data meltdown<\/strong>”<\/p>\n

\n For weeks, Canadians have been casting their envious eyes to Israel, where more than half the country has been inoculated against COVID-19. Israel, less than a quarter the size of Canada, has administered nearly twice as many doses of the COVID-19 vaccine.<\/p>\n

The Middle Eastern country has some innate advantages: It is small and centralized, and offered top dollar to ensure vaccines from Pfizer and Moderna would come fast, and in large volumes. But geography and money aren\u2019t the reason why Israel is outpacing Canada by 10-to-one.<\/p>\n

Israel has the vaccines because it has the data.<\/p>\n

In its shrewd deal with Pfizer, Israel offered to turn the country in one giant clinical trial: Providing the vaccine manufacturer unprecedented large-scale visibility as to the vaccine\u2019s efficacy. It\u2019s all made possible because of the country\u2019s state-of-the-art information technology<\/a> and robust national vaccination database.<\/p>\n

The rest of the world is currently benefiting from that incredibly granular information.<\/p>\n

Canada could never have struck such a deal. Its health technology is, charitably, a decade out of date. It lacks the ability to adequately track infectious disease outbreaks, efficiently manage vaccine supply chains and storage, quickly administer doses, and monitor immunity and adverse reactions on a national basis.<\/p>\n

Even though all the shipments of vaccines arriving in Canada come with scannable barcodes, to make tracking and logistics easier\u2014with some manufacturers even barcoding the vials themselves\u2014no Canadian province can scan them<\/a>. In many provinces, pharmacies can\u2019t access the provincial vaccine registry. Provinces do not automatically submit reports on COVID-19 cases or vaccines into the federal system, and must submit reports manually. Many crucial reports are still submitted by fax: Where fax has recently been phased out, they have been replaced by emailed PDFs.<\/p>\n

Our\u2019s is a dumb system of pen-and-paper and Excel spreadsheets, in a world quickly heading towards smart systems of big data analytics, machine learning and blockchain. It\u2019s unclear how Ottawa will be able to issue vaccine passports, even if it wants to.<\/p>\n

At the core of the omnishambles is a simple fact that Canada has no national public health information system, but at 13 different regional ones. Many of those regional systems have smaller, disconnected, systems within: Like a Russian nesting doll of antiquated technology.<\/p>\n

But there\u2019s good news<\/a>: It doesn\u2019t have to be this way. In some parts of the country, real progress is being made. Small technology start-ups are figuring out cheap, scalable and innovative solutions. In some provinces, progress can be as simple as updating operating systems.<\/p>\n

If we are ever going to build an efficient, cost-effective, and effective health infrastructure, Ottawa needs to take the lead. We need to abandon the idea that federalism requires us to have each sub-national government run entirely independent, walled-off, health databases.<\/p>\n

We need data sharing. We need shared infrastructure. We need a national public health system.<\/p>\n

***<\/strong><\/p>\n

For decades, Canada has been building out computer systems designed to track infectious disease outbreaks and vaccination campaigns. In non-pandemic times, that means monitoring the spread of sexually-transmitted infections, keeping track of supplies of vaccines for things like influenza and mumps, and keeping an eye out for novel outbreaks of infectious diseases.<\/p>\n

Most of the country relies on a public health system called Panorama, but not everywhere: Alberta, PEI, Newfoundland and Labrador, Vancouver Coastal Health, and the Public Health Agency of Canada itself all use other systems.<\/p>\n

The provinces and territories that do have Panorama use it to varying degrees. From one province to the next, the heath infrastructure has different names, different features, unique customizations and varying capabilities.<\/p>\n

This was never the plan. Canada, in fact, was once a world leader in digitizing its public health infrastructure.<\/p>\n

In 1996, at a national conference of health officials<\/a>, it was decided that \u201can immunization tracking system is urgently needed in Canada.\u201d It included a list of goals: To identify children in need of vaccination, to book app<\/a>ointments, to do population-level analysis of immunity to diseases, and so on.<\/p>\n

In 2002, basic, national, standards were drafted: \u201cThe time has arrived for a national program to be administered provincially, thus ensuring compatibility between provinces so that this health care information can be accessed when needed.\u201d<\/p>\n

When SARS hit Canada in 2003, before any of this technology could actually be implemented, health authorities found themselves woefully unprepared. The federal government and province of Ontario tried to manage the epidemic relying on \u201can archaic DOS platform used in the late 80s that could not be adapted for SARS,\u201d per an Ottawa-commissioned report.<\/p>\n

The country had only gotten a taste of what a deadly and hard-to-control infectious disease outbreak looked like: And it wasn\u2019t ready. It only underscored just how crucial this national database was. The solution to that was Panorama.<\/p>\n

It wasn\u2019t cheap. Paul Martin\u2019s government committed $100 million in its 2004 budget to seed the creation of Panorama, through not-for-profit government-funded Canada Health Infoway. His government also created the Public Health Agency of Canada to ensure there was a central preparedness for the next SARS.<\/p>\n

\u201cWith this budget, we begin to provide the resources for a new Canada Public Health Agency, to be able to spot outbreaks earlier and mobilize emergency resources to control them sooner,\u201d then-finance minister Ralph Goodale said in his budget speech. He promised \u201ca national real-time public surveillance system.\u201d<\/p>\n

The subsequent Harper government, seemingly recognizing the wisdom of what his predecessor had started, provided another $35 million more to fund the work. The contract to build this national surveillance system would ultimately go to IBM Canada.<\/p>\n

In 2007, Canadian health officials flew to a conference in Florida to tell their American colleagues how far ahead we were on this health technology.<\/p>\n

\u201cBy 2009 there will be a national surveillance system that will include a network of immunization registries,\u201d their powerpoint presentation said. They broke down how it would work: A vaccinator would enter a patient\u2019s information, scan the barcode on the side of the vaccine vial, and it would all go straight into the provincial database and, later, the federal system. A computer system could manage an outbreak from infection to immunity.<\/p>\n

Dr. Robert Van Exan, who ran health and science<\/a> policy at Canadian vaccine giant Sanofi-Pasteur, was tapped by Ottawa to figure out how to effectively barcode vaccines in the early 2000s.<\/p>\n

\u201cTechnically, it\u2019s a huge challenge,\u201d Van Exan told me when I interviewed him in March for the Globe and Mail<\/em>. \u201cAt least, it was.\u201d<\/p>\n

At the manufacturer, vaccines moved along a conveyor belt at a rate of about 300 to 1,000 vials per minute, he explained\u2014adding new labelling was a logistical nightmare. But, within a few years, he had corralled the technological know-how to get it working. He went back to the federal government, excited that he and his company were part of this digital revolution.<\/p>\n

\u201cCanada was ahead on this by a decade,\u201d Van Exan told me.<\/p>\n

But through the late 2000s and early 2010s, that plan seemed to get further away. There were delays and cost overruns, which largely fell to the provinces and territories: In 2015, the British Columbia Auditor General<\/a> reported that the province had budgeted less than $40 million to build and maintain Panorama. The cost wouldn\u2019t just double: It nearly trip<\/a>led. The B.C. government alone would pay more than $110 million, not including ongoing annual costs.<\/p>\n

As the program struggled, the Public Health Agency of Canada\u2014the body specifically created following SARS to help build a national public health strategy\u2014pulled out of Panorama. It let the provinces and territories fend for themselves. Nobody was left to actually enforce those brilliant minimum standards from years earlier. It stopped being a cross-compatible national system, administered provincially; and became a smattering of incompatible systems with no real national buy-in at all.<\/p>\n

Provinces like Alberta bailed on Panorama in frustration.<\/p>\n

The provinces and territories that stuck with it wound up with an inferior product. Beyond just the increased costs, the devastating report from the B.C. Auditor General found that core components were just missing. Online vaccine appointments? Vaccine barcoding? Offline usage? Federal integration? All those features were promised, but \u201cnot delivered.\u201d<\/p>\n

\u201cThe system cannot be used to manage inter-provincial outbreaks, the main reason for which the system was built,\u201d reads one particularly galling passage.<\/p>\n

Other features didn\u2019t work, or had severe limitations.<\/p>\n

Van Exan recalls how \u201cfed up\u201d the vaccine industry was with Ottawa. \u201cThey went through this trouble to put the label on the vials,\u201d he said. And for what?<\/p>\n

\u201cDespite a substantial federal investment,\u201d one peer-reviewed study pointed out in 2013, \u201cCanada continues to lag behind other countries in the adoption of public health electronic health information systems.\u201d A 2015 study found that multiple provinces failed to even meet the minimum standards set out in 2002\u2014standards that were already becoming stale and anachronistic.<\/p>\n

Those 2002 national standards haven\u2019t been updated since. (Health Canada told Maclean\u2019s<\/em> that the most recent standards were issued in 2020, although the document<\/a> it pointed to clearly labels them as recommendations for new standards.)<\/p>\n

Whether the standards are from 2002 or 2020 is somewhat immaterial: Ottawa doesn\u2019t even know to what degree the provinces follow the standards.<\/p>\n

The standards clearly call for Canada to have \u201creliable digital access and exchange of electronic immunization information across all health providers with other jurisdictions (including federal).\u201d<\/p>\n

In response to a question submitted in the House of Commons, Health Canada wrote last summer that \u201cit is not possible for the federal government to know the details of any of the configurations of the provincial\/territorial instances of Panorama in order to judge whether it meets a particular standard.\u201d The Public Health Agency has not performed an audit of Panorama, the government added.<\/p>\n

There are lots of reasons for the boondoggle. Many provinces and territories had competing priorities for what their health infrastructure ought to look like, and many balked at the idea of sharing data with Ottawa or even their neighbouring governments. \u201cThe provinces chose to do things independently,\u201d said one source with knowledge of the system, who spoke on the condition of anonymity. Some provinces tried to make Panorama \u201ctoo many things to too many people,\u201d they said, and ended up with a system that disappointed everyone. That\u2019s a common problem in Canadian technology procurement.<\/p>\n

Part of the issue was the technology itself. Canada tried to stand up an ambitious IT infrastructure at a time when things like cloud hosting and barcoding capabilities were still expensive, clunky and hard to do on a large scale. But the core problem was a total lack of leadership. Ottawa pioneered the idea for a national registry, then walked away when things got hard.<\/p>\n

Ontario family doctor Iris Gorfinkle has been calling for this national strategy for years. Last year, before we even saw our first vaccine, she warned in the Canadian Medical Association Journal<\/em> that \u201cit is imperative that we have the ability to provide potentially limited vaccines to those jurisdictions with higher disease rates to optimize vaccine distribution and coverage.\u201d<\/p>\n

I asked her why we haven\u2019t been able to do this. She answered in a word:<\/p>\n

\u201cInertia.\u201d<\/p>\n

***<\/strong><\/p>\n

\"An<\/p>\n

An AstraZeneca vaccine, complete with tracking codes, on March 2, 2021 (Frank Hoermann\/Sven Simon\/dpa via ZUMA Press)<\/p>\n<\/div>\n

In the last decade, provinces have had to make do. Alberta has modernized the legacy system it reverted to when Panorama went sideways. Ontario has tried valiantly to customize and upgrade Panorama until it resembled the system the province ordered.<\/p>\n

Over time, however, Panorama did improve. By about 2017, IBM was finally adding those features that had been left off. It built out new data dashboards, integrated barcode scanning, and added APIs to make Panorama compatible with other systems. Most critically, Panorama went from a clunky program that could only run on designated computers to a cloud-based program that could be accessed by any laptop, tablet or phone.<\/p>\n

Indigenous Services Canada, which administers some health services to First Nation communities, actually won an eHealth award in 2014 for its implementation of Panorama. One B.C. public health official lauded the agency\u2019s work, saying it would allow health professionals \u201cto better detect early signs of outbreaks by enabling sharing vital information between different public health related services providers.\u201d<\/p>\n

Some provinces, like Nova Scotia, upgraded Panorama into the new, more functional, version. \u201cOne of the great things about Panorama in terms of helping in an outbreak is just having more timely access to information,\u201d a prescient Nova Scotia provincial health official told CBC in 2019.<\/p>\n

But it hasn\u2019t been uniform: Ontario\u2019s heavily customized system is running an old version of Panorama. Saskatchewan still hasn\u2019t implemented core Panorama modules, like the one that tracks adverse reaction reports.<\/p>\n

One source said provinces could enable its system to scan barcodes and health cards with a flip of a switch\u2014several provinces, the source said, actually refused, insisting manual entry was more efficient.<\/p>\n

Meanwhile, provinces and territories are still relying on manual data entry and spreadsheets to track inventory and shipments. Some jurisdictions are logging immunizations with pen and paper. A citizen can\u2019t readily carry their immunization record from the Northwest Territories to Yukon.<\/p>\n

Pharmacists in Ontario need to enter every immunization into two systems: Once, into their own record management program; and, again, into Ontario\u2019s newly-fashioned COVaxON, a front-end interface that is supposed to feed into Ontario\u2019s outdated version of Panorama.<\/p>\n

The inefficiencies are glaring, But it gets worse.<\/p>\n

Notwithstanding inefficiencies and outmoded technology on the local level, the whole point of the Public Health Agency of Canada is to be able to track infectious disease outbreaks across the country. Right now, this is top of mind, as we wait to see the countervailing impacts of the COVID-19 variants and vaccines. A good system should be able to show us how different variants are spreading, and whether any or all of the vaccines are effective against which strains. But that only works if the Public Health Agency of Canada has the data.<\/p>\n

Ottawa technically has information-sharing agreements with the provinces, but a government response to a question filed by Tory MP Scott Reid exposes how archaic the infrastructure truly is. Ottawa \u201cdoes not have automatic access to data held in [provincial and territorial] systems, including Panorama,\u201d the government wrote. \u201cIn the early weeks of the outbreak, some provinces were sending case information to PHAC via paper.\u201d For the first four months of the pandemic, Ottawa wasn\u2019t even collecting basic data on COVID-19 cases, like ethnicity, dwelling type, or occupation. Things have improved somewhat: Provinces now submit their reports manually, via a web portal.<\/p>\n

The Public Health Agency of Canada reported that its \u201cemergency surveillance team receives electronic files in .csv format from provinces and territories.\u201d<\/p>\n

A March report of the Auditor General found that \u201calthough received electronically from provincial and territorial partners in the majority of cases, health data files were manually copied and pasted from the data intake system into the agency\u2019s processing environment.\u201d The audit also reports that many aspects of Ottawa\u2019s data sharing agreements with the provinces and territories are not yet finalized. The audit further found that crucial information about COVID-19 cases\u2014such as hospitalizations and onset of symptoms\u2014was often not being reported to Ottawa.<\/p>\n

The auditors came to a similar conclusion to many experts, like Gorfinkle and Van Exan: \u201cWe found that for more than 10 years prior to the COVID\u201119 pandemic, the agency had identified gaps in its existing infrastructure but had not implemented solutions to improve it.\u201d<\/p>\n

When it comes to any vaccine, there are reports of adverse reactions\u2014while they are rare, the recent panic over the AstraZeneca vaccine and blood clots shows this tracking is absolutely crucial. When a Canadian reports an adverse reaction to any vaccine, the province must pass it onto the Public Health Agency of Canada\u2014which must, in turn, send it to the World Health Organization. Until very recently, Ottawa required that provinces and territories submit those reports via fax. More recently, it has modernized: \u201cprovinces and territories submit data [on adverse reactions] in a variety of formats, including line list submissions and PDF submissions,\u201d the government said. That still means the reports must be entered manually. Some provinces only submit their reports weekly.<\/p>\n

Panorama, meanwhile, has an adverse reaction tracking and reporting feature. The Public Health of Canada just hasn\u2019t been using it.<\/p>\n

The Public Health Agency of Canada insists it has \u201cwell-developed surveillance and coverage information technology\u201d and it responded to the Auditor General with further more promises to address the gaps it has been vowing to fix for a decade. It\u2019s hard to know if that progress is real or not.<\/p>\n

In November\u2014already some eight months into the pandemic\u2014the federal government sent a secret request for proposals to a shortlist of pre-qualified suppliers looking for a \u201cmission-critical system\u201d to manage vaccine supply chains, inventory, and to \u201dtrack national immunization coverage.\u201d The $17 million contract went to Deloitte, and it is supposed to plug into the disparate provincial systems to provide some semblance of a national picture. But Ottawa is refusing to disclose any timelines, details of the project or really anything beyond some boilerplate talking points. We only know about the project because the request for proposals was leaked to me<\/a> in December. (\u201cIt\u2019s awe-inspiring that they would withhold that information,\u201d Gorfinkle says. I agree.)<\/p>\n

So long as we commit to this madly off in all directions strategy, Ottawa can\u2019t build a functional national system. Federal agencies can\u2019t coordinate, much less individual provinces and territories. The patchwork makes national visibility impossible. Worse than a garbage-in, garbage-out problem\u2014provinces can\u2019t even agree on how to format the garbage. The result has been error and inefficiency.<\/p>\n

One Ontario woman was hospitalized<\/a> after receiving three doses of a COVID-19 vaccine, two of them just days apart\u2014something that would never happen if she had an accessible, up-to-date vaccination record.<\/p>\n

Meanwhile, seniors have been forced to stand in line for hours in Toronto, as health staff waste time doing work that could be easily automated. Epidemiologist Tara Gomes tweeted<\/a> that her mother \u201chad to repeat her address so many times to the person at check-in that she finally asked for a pen and paper and wrote it down.\u201d It gets more frustrating when you realize, as Gomes noted, that her mother had to provide her personal information to get the appointment\u2014the province\u2019s COVaxON booking portal doesn\u2019t connect to the COVaxON vaccine registry.<\/p>\n

\u201cYou can\u2019t blame one government,\u201d Van Exan says. Every level of government of every political stripe, has let this Frankenstein\u2019s monster of a digital health system continue to limp along.<\/p>\n

\u201dIncluding the current one.\u201d<\/p>\n

***<\/strong><\/p>\n

The barriers to improvement are lower than you might think.<\/p>\n

There is no particular reason why Vancouver ought to be using different vaccine management software than Victoria, or why Toronto should be running a different version of Panorama than Halifax. The diseases these health authorities face are the same, as are the vaccines dispatched to combat them.<\/p>\n

Ottawa seems, a year after the start of this wretched pandemic, to be coming around to that idea. The Public Health Agency of Canada told Maclean\u2019s<\/em> it will finally be adopting Panorama, which \u201cwill enable more automated and timely data sharing and reporting.\u201d At the end of March, it wrote that the new system \u201cis expected to be online in the coming weeks.\u201d Deloitte, IBM and the Government of Canada have been working together to get Panorama working with the Public Health Agency\u2019s existing systems.<\/p>\n

But just adopting Panorama isn\u2019t nearly enough.<\/p>\n

Step one is deciding if we really want a national system. If the provinces and territories are truly, completely, incapable of running a system to national standards\u2014or Ottawa is incapable of managing those standards\u2014then maybe we should actually commit to decentralization. Shut down the Public Health Agency of Canada and download money and responsibility for public health to the provinces.<\/p>\n

The benefits of a national system, however, are real and obvious. If we can agree with that principle, then step two is picking a technology and sticking to it.<\/p>\n

We shouldn\u2019t be married to sunk costs: If there is a better system out there than Panorama, we should consider it. But actually committing to Panorama is the obvious choice. It is already the standard for most of the country, and there\u2019s no guarantee that starting from scratch will rectify our jurisdictional issues. What\u2019s more: A list of other countries are now relying on Panorama. The more customers, the better.<\/p>\n

Sticking with Panorama doesn\u2019t mean that Alberta and Vancouver need to abandon their proprietary systems\u2014but it does mean they need to be speaking the same language.<\/p>\n

To that end, step three is standardizing data collection and sharing.<\/p>\n

This, of course, needs to be done wisely: Patient data should be anonymized, for security reasons. Any cloud systems must have their servers within Canada (Nova Scotia\u2019s data is available on the cloud, but entirely located in Halifax and Quebec.) And we need to make sure that governments are entirely transparent about how, when and why they use this aggregate health data. But all those jurisdictions need to use the same file formats, collect the same variables, and report them in the same efficient, automatic, manner.<\/p>\n

Step four is investing in the infrastructure we need to make all this work\u2014and sharing resources, where that makes sense. If health authorities need an app to scan barcodes to track shipments, it doesn\u2019t make sense for every province and territory to be using a different app. If we need to buy barcode scanners, every province should be buying the same one. Where it makes sense to share servers, we should share servers.<\/p>\n

Step five is the easiest: Keep things current. It\u2019s hard to think of any other instance where relying on 20-year-old technology standards makes sense. We need to be constantly revising and updating how we handle infectious diseases\u2014the benefits will be apparent, in how we tackle everything from mumps, to HIV, to the next highly infectious disease that reaches our shores.<\/p>\n

Again, these things are very doable, and don\u2019t require any government to sacrifice autonomy. And, best yet, it can save us money.<\/p>\n

On barcoding alone, a government panel estimated in 2009<\/a> that Canada would see $1 billion in savings by saving time, preventing wastage and reducing errors. On virtually every other front: Struggling through antiquated IT, and relying on overworked health staff to make up the difference, is expensive.<\/p>\n

Governments don\u2019t have to do it alone, either: Private industry can help.<\/p>\n

In Alberta, start-up Okaki devised a simple, scalable system that can manage vaccination campaigns and even scan vaccine barcodes. The company has been running immunization drives for years, mostly in First Nations, and feeds its data directly into the provincial system\u2014it is also compatible with Panorama.<\/p>\n

CANImmunize, which began as an app allowing individuals to track their own vaccination record, now does many of the things Canada\u2019s national system was supposed to do\u2014including tracking appointments, monitoring adverse reactions, scanning vaccine barcodes. The technology can be fully integrated with Panorama.<\/p>\n

Since I began writing about this issue, for the Globe and Mail<\/em>, my inbox has been inundated with emails from companies insisting that they could fix these problems in no time at all. There is no shortage of qualified people looking to help, and to innovate.<\/p>\n

A group of companies, led by IBM, recently won a contract to build Germany\u2019s vaccine passport system. It will use blockchain technology to make citizens\u2019 vaccination records accessible, secure and verifiable. If we don\u2019t get our act together soon, Canadians will be lucky to even get laminated paper vaccination records.<\/p>\n

The provinces and territories need to come to the table and do this together. Our self-injurious commitment to federalism at all costs is endangering our own citizens. Because every province plays in their own needlessly walled garden, they are less prepared to deal with epidemics, they are less efficient at administering vaccines, and their citizens are more at risk from getting sick and dying.<\/p>\n

Our country is supposed to be one of cooperative federalism, where provinces and territories can pursue creative solutions to unique problems. But when it comes to the basic mechanics of infectious disease outbreaks, there is no central leadership.<\/p>\n

COVID-19 does not change shape when it crosses from Manitoba to Nunavut. We need the same set of tools in every province, or else we\u2019re never going to fully beat this virus\u2014and we\u2019re going to be dangerously ill-equipped for the next one.
\n<\/span><\/p><\/div>\n